CML Diary

My name is Matt Sinclair and I was diagnosed with Chronic Myeloid Leukaemia on 19th October 2005 at the age of 27.
I have written this diary to keep my family and friends informed how things are going with me in Scotland.

Wednesday, July 23, 2014

I'm not quite sure where to begin...it’s only been 3 years and 2 months since my last update. First things first, life is good! As I look back over my posts that began nearly 9 years ago, it’s a nice relief to be able to say that. Sitting in an eerily quiet haematology ward and hearing the dreaded, and very unexpected, news from a nervous registrar, seems a lifetime ago. Those words however, still ring as clear now as they did in 2005... Life hasn't all been good however during these past 3 years, 2 months but I'll elaborate on that later. It's mid-Winter in Sydney and there's a distinct night-time chill in the air - it's funny how we've acclimatised since moving back to Australia nearly two years ago. I would definitely have a lot less clothing on if I was still in Scotland! We made the call to move pack up our life and move to Australia as my CML was stable, with my PCR seemingly resolute on staying at 0.01%. Timing was also good due to the kids ages of 5 and 1 (just short of 2), with this being such a great opportunity for our girls to make good use of their Aussie passports. Whilst we have never regretted the move, you can never underestimate what stress a move like this can put on your body - I'm not sure if it was sheer coincidence following the stress of the move, or a genuine side-effect from my ever reliable medication Dasatinib, however my first appointment with a highly respected CML specialist in Oz didn't go as planned. We came here for the life I knew growing up...sun, sun and sun! The lifestyle is awesome and very easy to slip back to the old way of life. I didn't exactly anticipate being told by the specialist that he had picked up a slight heart murmur and that he will need to refer me to his old mate, the Cardiologist. Shortly after squaring up my bill (I'm missing the NHS already!!) I was hooked up for an ECG, followed by a echocardiogram - exactly 2 months after moving back to Australia, thankfully provided due to my CML stability, I was being told I had Pulminary Hypertension. This small, benign murmur had now morphed into a complicated disease, very difficult to treat (lung transplant being the final option apparently...) - and following up my old and new CML Specialists, there can be a rare side effect from Dasatinib that causes this increase in pressure from the lungs to the heart (hence causing a murmur). Clearly, these Meds had to stop immediately and then applications were made for me to move onto my third line of defence, having already tried and failed on Imatinib many years ago. The good news is that I was granted access to Nilotinib and within weeks, my follow echocardiogram showed a waning presence of Pulmonary Hypertension, then again a month later, it was gone. It seems Nilotibib and I work well together and since then, the PCR's dropped away from the familiar 0.01%, all the way to 0.003% after 10 months - however, my latest result just came in and its back at 0.009%. You try to train yourself to manage these fluctuations of results, but I still can't seem to unfortunately. So whilst I'm not happy that the PCR has 'spiked', it’s still lower than 12 months ago...and I've been reassured by my Consultant that 'this is just the same result, don't worry'! I'd be keen to hear other theories on these spikes...Kas and I believe that the harder I push my body physically, the less effective my meds prove to be - this is probably the only theory that has upheld since diagnosis. Whilst I could swear that I had no known side-effects whilst taking Dasatinib, my change to Nilotinib gave me an enormous boost of energy. Since Christmas, I've regularly ran approx 8km (5 miles) three times a week, played tennis every Wednesday, surfed with my mates when I could on a weekend and went to the homemade, downstairs gym three times a week. I easily feel the fittest I have ever felt, however the pre-empted PCR spike that coincides with this activity has occurred once again. This could be a coincidence as I've said, however the only real thing that has proven true in my limited medical experience! Sydney has changed a hell of a lot! The beaches are just as clean and the sun, just as hot...interesting to see however, that Australia is now one of the highest consumers of champagne, high end aged whisky and craft beer. Yep, I am still in the booze industry and love to see how countries change over time. We are having an awesome time since moving back and the girls are absolutely loving it - with their very own backyard pool, a dozen jaw-dropping beaches within a 15 minute drive and plenty of good weather to make the most of the outdoor adventures on offer, what’s not to love. And whilst we'd love to be in Glasgow for the Commonwealth Games starting today...as I said earlier, life is good!

I know its been an incredibly long time between posts, my longest ever actually, but a few recent events have made me realise that I have a responsibility as a leukaemia patient, to go on and continue my story.

Firstly, a friend of mine who was diagnosed with CML at roughly the same time (October 2005), Dave Cox, recently passed away. This came as a pretty big shock to me as we had both been prescribed the same meds initially, however his body was unable to tolerate them and he had no other option but to take on a risky bone marrow transplant. He was a real fighter and his blog gave hope to loads of people who were lucky enough to meet him or to read his blog - his legacy will continue to live on undoubtedly.

And secondly, the Leukaemia fundraising committee that I am a member of sent an email two weeks ago to say that no-one showed up for a recent meeting. A no-show to a charity meeting...! So after attending this latest meeting, and my first one in over a year (partly through guilt and also a free diary), I feel a boost of energy and an overwhelming sense of responsibility to help out where I can. My fundraising challenges have been somewhat less strenuous than the 3 Peaks Challenge in 2008, where 15 of us hauled our bodies up the 3 highest mountains in the UK within a 24 hour time frame, however we still raised well over £3k with a Wine Tasting night a few months ago. Much more my style these days...

There are quite good reasons I might add as to why I've been so quiet....none more important than the birth of my second wee daughter, Holly. She's another little beauty just like her older sister Chloe....lucky she looks like her mum! Two girls make being a dad very much a full-time job.

I still remember the PCR result I received in November 2008 of 0.29% (my best result in a long time - anything under 0.1% is considered the 'safe haven') and it's this that made me realise I now have an opportunity to push my CML swiftly to the side and make 'life' a real focus for me. Since then, I would argue that very few people at my work know anything about my on-going condition....apart from my balding head, they wouldn't have a clue. I just say my head is just too big for my hair. So, since this PCR result, I've dedicated copious time to my work and in February 2009 I was awarded with a decent promotion. Since then I have kept the foot down and again been promoted which just shows that if genuine commitment and energy are directed towards anything, anything can be achieved. I am not saying that I am at the top of my game just yet but I certainly have no intention of slowing down until I reach lofty levels at work.

My CML condition continues to puzzle the medical professionals, as I very slowly continue to achieve better PCR results - my latest was 0.011% from last month, so things are looking good for me. I honestly feel the less time I have spent on worrying about what might happen, the better my body has adapted to digesting my strong meds. I know that I am lucky as I have no real side-effects and manage to keep up a 'normal' standard of life. When I re-read my blog posts from 4-5 years ago, I never would have envisioned getting to a stage in my life where I am happily married with two beautiful daughters and a good quality of life. I certainly have been patient and know I deserve this, for as long it shall last, and that is where I realise that I still have a story and a story others with a similar condition could learn from. I really have to remind myself that there are people every day being diagnosed with leukaemia and that means there are people every day shit-scared of what life has thrown their way. So, I shall continue to fight, share my experiences, albeit not as frequent as I would like due to life commitments I can only be proud of, and help those who need some support when the chips are down.

And one final piece of good news, actually two, is the birth of our new nieces (yep, more girls). Nick and Claire had their 3rd called Olivia and Gav and Natalie had their 1st called Rebecca. Awesome!

I genuinely have had intentions to update my blog as even I know it’s been far too long. As usual, there are so many other things keeping me busy and what’s more important as far as I’m concerned, my thoughts have been far away from CML….and that can only be a good thing.

I continue to tolerate my meds well – the 140mg of Sprycel I swallow each night is the only real reminder that I’ve still got some unwanted Leukaemia cells lurking deep in my body, attempting to hide away from this unrelenting drug. When ever I’m asked about side-effects, I really don’t know what they are anymore as I’ve been taking CML medication for so long. I definitely feel well enough to work, exercise and play…so whilst I’m sure I do have side-effects, I’ve just managed to get on with life and treat this as the norm. I think it’s absolutely brilliant that I’ve been given the opportunity to take these pills and get on with life…it’s a far better option than what was available only 5 years ago.

Major Molecular Remission (MMR), or the safe haven as my docs call it, finally arrived after 4 years post-diagnosis. My PCR results were stuck at around 0.15% and then finally I cracked the 0.1% barrier in December last year with a result of 0.04% - gold! The next one arrived via an email whilst I was basking on a beach in Australia only two weeks ago – this one was 0.05%. According to European guidelines, I can now be seen 6 monthly rather than 3 monthly. Again, time to crack open a few extremely cold beers – the timing was perfect as we were on holidays with my family! So, all in all, it just shows that patience really is a virtue and that whilst a lot of CML specialists are keen to move from drug to drug quite quickly when there are signs of intolerance, a little persistence in this case seems to be working. I’m not getting carried away but after so many rubbish results, I’m not going to let a good result slip by without having a well deserved celebration.

The Australia trip last month was a great time – I felt the wrath of 300 fellow passengers as they passed the business class seating and they saw my two year old daughter Chloe lounging back, her legs barely even stretching to the end of the seat. Somehow we were both chosen for an upgrade where we were able to join Kas at the front of the long-haul flight, as she was already there on a work-paid ticket. The sun, the sand and the surf were just as awesome as the last time I saw it. We spent a full week on the beach with my family…it was great to get my pasty white scotch belly out and soak up some much needed vitamin D. It’s always a busy time when we head back home for holidays and there are so many family and friends to see but it’s all worth it – it’s always good times when we catch up with everyone and also pretty tough when we constantly have to say our goodbyes.

My work is storming along and gaining momentum which is brilliant – the busier I am, the better I feel. They were generous enough to donate a few boxes of wine for me to host a wine tasting event in Glasgow. The event was last night and it was hosted at the Clydesdale Bank, which is a beautiful new building in the centre of town. The huge rooms were donated, as was the food….so it was over to me to give some boring wine chat and let the 100 paying guests get on the booze. The night was deemed a huge success and we managed to raise over £2,500 for the Paul O’GormanLeukeamia Research Centre. A great cause and a great night! What got me thinking about updating this blog though, happened after I met a young woman called Laura and her family – she is in her mid-20’s and recently diagnosed with CML. That immediately took me back to that first year where I struggled to understand how my life now had to be. She reminded me a lot of myself when I was diagnosed…Laura has a positive attitude, she’s already back at work and she’s helping to increase awareness of CML. It’s people like Laura that drive the public’s perception, understanding and keeping the momentum swinging in the right direction. I wish her all the best.

So the blog has now been updated, my results are good, my brother-in-law Gav’s prognosis is great after being diagnosed with testicular cancer last year, the family are good and well, Kas and Chloe are great, I’m busy and we’re raising cash for some pretty decent causes…life’s good!

Thursday, August 06, 2009

PHOTOS - Julie & John's Wedding Day; Julie and the Girls; Kas and I at Church; The First Dance; Cycling through the French Vineyards; Cheesy Colin & Lorna; Me at the Harbour; Lorna, Eva, Chloe and Kas out for a Walk; Dinner in the Villa; The Edington's by the Water; Eva & Chloe; At the Villa by the Pool; Paul's Deep-Sea Fishing Adventure; Sea-sick and having a Beer; Stag Do Dress-up Day that looked far too real; Paul meeting Benfica mascot; Happy Chloe...

It’s only just hit me after reading through my latest post, how much has occurred since April. It was never my intention to let my blog updates slip; it’s really just a matter of circumstance than laziness. After I finally got used to penning my thoughts on a regular basis, I actually found it therapeutic as more often than not, it took me to actually write it down first before I could understand it. But now, thankfully, I find myself in a pretty good position on a personal level with regards to CML and most other things in my life manage to dictate rather than the opposite. However, it’s only when I get the best news I’ve had in terms of prognosis, that the trend continues. The good with the bad…

The customary email from my doctor arrived, 2 weeks and 2 days after my PCR test, and with usual trepidation, I opened it to reveal my latest result. This one however, read that unfortunately my test had become “lost” in the system and for me to book in another appointment and re-start the process. So, again, after 2 weeks and 2 days from this second test, the email again popped into my inbox…this time there was a result and along with the words “getting there!”. This new result showed a PCR of 0.125% - slightly down from the last one of 0.149% but nevertheless, it was the best result I’ve had to date and now achingly close to the “safe haven” of 0.1%.

The same day however, whilst celebrating with a glass of MajellaCabenetSauvignon from Coonawarra in South Australia (unreal stuff!!!), we were informed of some awful news about Karen’s brother Gav. My mate and brother-in-law.

He had just been diagnosed with testicular cancer. At 29. Shit.

Gav’s now undergone a major operation to remove the tumour and now undergoing chemo, in the same cancer hospital as I go to, and is mid-way through the first round of two. That shouldn’t even be in the same sentence – “same cancer hospital as I go to”! He’s a tough bloke and although he’s going through hell right now, I’m sure he’ll battle on through and come out the other side a stronger person. It just doesn’t seem right for Kas to have a husband and brother attending an oncology ward.

Kas, Chloe and I managed to get away with our mates to France in June, 3 couples and each of us with a child under 2. It was an unreal place – we were in an amazing island called Il De Re on France’s west coast. The weather was perfect, as was the wine and food. Within the French village, we were spoilt with a daily marketplace bursting with seafood, cheese and all things French. I managed to stack on a few kilos that week, but it was well worth it.

Then to follow, it was off to Lisbon in Portugal for my mate Paul’s stag weekend…organised by my mad mate Ish. It was an unreal and surreal weekend – it was great to catch up with the boys and carry on like old times. The deep-sea fishing wasn’t well received by a few, as sea-sickness got the better of them. The next day, it was time to dress up and don the gear that was requested of us…Reservoir Dogs outfit (black suit, white shirt, black tie, black glasses). Then Paul was dressed up in an authentic Arabian sheik outfit, where we were then transported to Benfica Football Club for a stadium tour. It was only when we arrived, did the reception we receive make us aware how truly realistic it looked. A sheik (dubbed Sheik Ali Bin Drinking) surrounded by 5 guys dressed up as security. Within 5 minutes we were ushered into the secret tunnel to get a private tour by a Benfica official, photographers, groundstaff and even the football club mascot, a massive bald eagle. I think this was sparked by Ish when he said “the Sheik wants to buy this club”. Overall it was a great weekend, plenty of banter and plenty of tourists caught up in the royal tour from the “aussie” boys from Saudi Arabia…

We've also been to two unreal weddings - John and Julie & Chris and Ros. Both absolutely brilliant days!

My work is still very busy, although we are currently undertaking a restructuring process – I don’t think there are many industries that aren’t affected by the economic slowdown. I still absolutely love my new job but there’s quite a lot of travel involved, London every two weeks, and the toughest thing is not seeing Kas and Chloe, especially seeing Chloe is changing almost daily - her new words are "toast", "daddy took it" and my favourite, "magpie". In between all these trips to London, Kas has also spent a week in Australia on a busy work visit setting up some medical drug trials (Chloe and I may even tag on her next one if she goes back in January). But it feels great to push CML aside and put my head down and get on with building my career and getting on with life. Because CML medication is now so advanced and it offers such a great quality of life, a big issue with this disease is the mind-set and mentality (is that the same thing?) of the individual. If you want to lead a “normal” life, then you can certainly give it a try. In the majority of cases, the only thing stopping you is you.

I’m back at the docs in a fortnight, where I’ll have my three monthly catch-up and PCR test taken. My folks will be visiting in 5 weeks time, so they'll probably be here when the result comes in. Please keep the emails and messages coming…even though I’m rubbish at updating. Best wishes also to Gav, who I’m sure will kick some cancer arse!